Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Dna Test Positive, Biopsy Negative

confused mom

Recommended Posts

confused mom Rookie
confused mom
Posted

My daughter tested positive for Celiac with a blood test, but her endoscopy biopsy was negative. The doctor said that she has "Latent Celiac" and that her severe stomach aches were not at all caused by Latent Celiac, but by IBS (irritable bowel syndrome). We had a DNA test done for her and it came back positive for the DQ2 gene, meaning she is highly likely to have Celiac at some point. If the Celiac is latent and hasn't "happened" yet, does she really need to be gluten-free for the rest of her life? I asked the doctor that question and he said that the jury is still out on that. No one knows if/when she will actually have full-fledged Celiac, so he wants her to be gluten-free just in case. I hate to have her deal with this life-changing diet if she does not need to. Has anyone else experience "Latent Celiac" and, if so, did you decide to go gluten-free? I'm having a hard time accepting this since the doctor said that her stomach aches weren't even caused by gluten. So why are we going gluten-free if it's not going to help her stomach? (She has been very constipated, so treatment for that has improved her stomach aches).

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

If she had positive blood work she has celiac and the diet will relieve her symptoms. How many biopsies did the doctor take? What were the results of those biopsies? Some doctors won't diagnose until the villi are totally destroyed. In addition damage can be patchy and get missed. Going gluten free is what she needs to do and you are in the right place for info and support with that. Also everyone in your family should get the blood tests, not all celiac presents with GI problems and it is associated with many other issues also from mood issues to arthritis to skin problems and much more. Ask any questions you need to and I hope she is feeling better soon.

confused mom Rookie
confused mom
Posted
  • Author

If she had positive blood work she has celiac and the diet will relieve her symptoms. How many biopsies did the doctor take? What were the results of those biopsies? Some doctors won't diagnose until the villi are totally destroyed. In addition damage can be patchy and get missed. Going gluten free is what she needs to do and you are in the right place for info and support with that. Also everyone in your family should get the blood tests, not all celiac presents with GI problems and it is associated with many other issues also from mood issues to arthritis to skin problems and much more. Ask any questions you need to and I hope she is feeling better soon.

Her biopsy report states:"duodenal mucosa with mildly increased intraepithelial lymphocytes. Villous architecture is unremarkable. Plasma cells are present but there is no increase in lamina propria inflammation and no foamy macrophages. The findings can be seen in symptomatic, latent, or partially treated gluten sensitivity (celiac sprue)."

ravenwoodglass Mentor
ravenwoodglass
Posted

The findings can be seen in symptomatic, latent, or partially treated gluten sensitivity (celiac sprue)."

I think your doctor may have put her in the 'latent' catagory because she has C and not D. She is symptomatic but unfortunately her doctor wants to label her with IBS. At least he did tell you she needs to be gluten free for life and that is what you need to concentrate on. Some doctors might have said to keep her on gluten and come back in a year to see if the villi are destroyed yet but that could do a lot of damage to other organs, some that would take years to repair if at all. I know that her needing to be gluten free is not likely to be what you want to hear but that is what needs to be done.

Darn210 Enthusiast
Darn210
Posted

I'm not a doctor . . .

Positive blood test = Celiac disease in my book. Furthermore, I would bet those stomach aches are from Celiac Disease. IBS is a catch-all for generic gastro stuff going on but the doc is not sure why. Being positive for the gene does not mean that you will develop Celiac Disease. About a third of the population has the gene but only about 1% develop the disease. (I believe Dr Green says that in his book "A Hidden Epidemic")

She needs to go gluten free.

By the way . . . I was in the same boat as you. Positive blood test, negative biopsy. However, I had asked for a lactose intolerance test and that showed not only was the lactase enzyme low, but all the other enzymes that are produced in the tips of the villi were low as well. My doc diagnosed celiac based on the positive blood test. I was going to prove him wrong by following the diet to a Tee and showing him that her symptoms (regurgitation and constipation) didn't go away (yep, I was in major denial). . . ummmm, well the symptoms DID go away. Then as luck would happen, she had something with wheat in it (not just cc, but actually listed as an ingredient) and had an immediate reaction. We never looked back. Try the diet.

confused mom Rookie
confused mom
Posted
  • Author

I have another question - her symptoms came on suddenly this past November. She never had stomach aches (except for the occasional constipation) prior to that. I've heard so many people say that their symptoms lasted for years before a diagnosis. I think that's why I'm in denial since this happened so suddenly. Is that strange??

ravenwoodglass Mentor
ravenwoodglass
Posted

I have another question - her symptoms came on suddenly this past November. She never had stomach aches (except for the occasional constipation) prior to that. I've heard so many people say that their symptoms lasted for years before a diagnosis. I think that's why I'm in denial since this happened so suddenly. Is that strange??

No it's not strange. The reason why so many of us have symptoms that lasted for years is because most of us were misdiagnosed for years. For me it was over 40 years although I had celiac symptoms since childhood. Doctors are finally starting to test for celiac and starting to realize that false negatives are common with testing but not false positives. For some celiac has a definate trigger that we can identify, for women it is sometimes childbirth, for some it is an illness like a severe flu or mono for example, an injury or surgery or it can be stress that triggers it and some can't pinpoint the trigger. The occasional constipation may even have been a symptom for her as some of us have C for a while before we start having D.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,547
    • Most Online (within 30 mins)
      7,748
    gizmo1jazz2
    Newest Member
    gizmo1jazz2
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.